Odd behavior is quite common and in many cases expected in my family. Once my Grandmother, a former lounge singer was discovered outside of Wal-Mart crooning Christmas carols while the Salvation Army guy accompanied her on his bell. My mother loves nothing more than to catch you off guard by doing something shocking; like mooning the garbage men for example. I have an uncle who used to put pantyhose on his head and chase us around the house. I have a cousin who used to pretend he was Bob Barker and everyone who came over was told to “come on down.” I myself had a picnic basket full of Barbie dolls hidden in my closet until I was 17. Going to see a psychiatrist was not that out of the ordinary. I haven't yet begun to talk about my sister Alli who at times has had at times whole teams of doctors and counselors tending to her various maladies. One of which she became so obsessed with she had a T-shirt made with the woman’s name spelled across the front. Over the years my mother would periodically take me to see therapists to make sure coming from a broken home and having an emotionally challenging sibling wasn’t going to screw me up irreversibly. I never wanted to go and never quite realized what I was there for. Mostly they’d want me to talk about my family and draw pictures of them. Which I did, spending the most time giving my mom and sisters long flowing hair. As a kid my coloring books only ever had the hair filled in. When I was seven my teacher told my mother that I was very bright but never seemed to get my work done. I was taken to an education specialist who diagnosed me with Attention Deficit Disorder and I was briefly put on Ritalin. Nowadays it seems that nine out of ten kids is labeled with ADD and doped up, but at the time it was a relatively new phenomenon. Ritalin did not work for me though; it tended to worsen the nervous tics I sometimes got in times of excitement. I can remember having such tics all of my life, never anything too troubling, but there just the same. I remember the day I made my First Communion the teacher was lining us all up to walk down the aisle of the church and she told me to stop rolling my neck to one side. For years people asked me if my eyes were bothering me because I would blink numerous times in rapid succession. During all the trouble I had gone through starting high school the tics kicked in with a vengeance. The last thing in the world I needed was another thing to make me feel different from the other kids. But when I walked into that doctor’s office at age fourteen that is exactly what I got.
I like to think of my family; parents, grandparents, sisters, aunts, uncles, and cousins as a sort of the Baskin Robbins of mental disorders; 31 flavors of crazy. We have a wide variety of clinical depressions, obsessive-compulsives, borderline personalities, and Bipolar's running the gamut from mild to extreme, with an occasional substance abuse problem thrown in for good measure. It amazes me that a family so full of such warmth, generosity, and humor can have such a dark side, but there it is. I am pretty certain, however that we are not all that unique in the modern American family landscape.
Ironically not six months to a year prior to the Doctors visit that would change my life I recall watch an episode of “LA Law” with my mom and sister. In this episode the lawyers were representing a man who had something called Tourette’s syndrome. We laughed hysterically at this man who was unable to control neither his body nor the string of obscenities that spewed from his mouth. Having lived with Big Al all our lives and meeting all of her friends and classmates we thought we had heard of everything under the sun. This Tourette’s syndrome was new one for us. We laughed at how outrageous it was. You cannot imagine the shock, in fact the abject horror that shot through my veins when I was told I had it.
That day I went to see the psychiatrist I thought I was going because of my anxiety, but he was very interested in my neck tic when he noticed it, so we made a follow up visit. He asked me a lot of questions about when I’d first noticed having tics, and what seemed to make them better or worse. I told him in all honesty that I really didn’t notice the tics, other people did. That must have been what made him suspicious. Tourette’s syndrome is a neurological disorder which reveals itself in early childhood or adolescence, usually before the age of eighteen. It is defined by motor or vocal tics that last up to a year or more. One the first and most common tics children develop are facial tics often blinking of the eyes which I had. The cause of Tourette’s is not yet known although there is considerable evidence it is the result of abnormal activity of the brain chemical Dopamine. Guess what? As it turns out people with Tourette’s are more likely to have attention problems, gasp! Impulsiveness, something called Oppositional Defiant Disorder which basically causes someone to do the exact opposite of what they are told, I in fact have the opposite of that, I have an irrational fear of getting into trouble, obsessive compulsive behavior, and learning disabilities are all associated problems people with Tourette’s syndrome can develop. Males are affected three to four times more often than females and there is usually a family history involving Tourette’s, Obsessive Compulsive Disorder, or other neurological dysfunctions. There’s that word again; dysfunction. Can’t anything ever just “function” like it’s supposed to!
That Tourette’s is so closely related to Obsessive Compulsive Disorder makes sense. Some members of my family suffer fromOCD to varying degrees. I was the only one with Tourette’s though and I took the news like a death sentence. I had this fleeting image of my future where I am yelling “fuck you bitch” to people on the street and barking at them. For a fourteen-year-old I suddenly became full of righteous indignation right there in the Doctor’s office. I went full-on soap opera diva; “why me? Haven’t I gone through enough? Why would God do this to me? I am a good person damnit? After my little outburst my doctor, sat my mother and I down and explained the facts to us. These are the facts; I have a mild case of Tourette’s syndrome. In fact the majority of sufferers have only a mild case. I only have small tics; mainly muscular. The main one is the rolling of my neck to one side, the blinking stopped around the same time I hit puberty and only comes back in moments of high stress. My tics tend to get a lot worse under stress and decrease when I’m focused or concentrating on an absorbing task. I have no verbal or vocalized tics also known as Coprolalia, in fact only 15% of people with Tourette’s do. However, I guess it makes for more riveting television and funnier jokes than a neck roll, so that is the element the media seems to fixate on. I do admit that once I got a little more comfortable with my diagnosis I would have some fun with it. Sometimes at dinner I would quack or cluck just to get a cheap laugh. And I’d be lying if I said there weren’t times when I’d love to cuss someone out and blame it on Tourette’s. I did use it recently as an excuse to get out of jury duty, so you see everything has its perks.
I have never been able to take any medication for it. They tried a few but they make me so tired I can not function. When I was a sophomore in high school my doctor tried me on a new drug but it turned me into a zombie, I fell asleep at my desk while a river of drool poured out of my mouth. I told everyone it was a bad reaction to allergy medicine. At that time I would have rather people thought I had narcolepsy than to tell them I had Tourette’s syndrome. I have learned to live with my Tourette’s. In all honesty there are times when I forget all about it. I’ve spent my entire adult life performing on a stage in one form or another, and when I am on stage there are never any tics. Not one, the psychological aspects of that fascinate me, it’s like my brain knows when to shut it off. However it is not something I have any much control over. Though tics are involuntary, sometimes it is confusing to people since most of us with Tourette’s can exercise some control over our symptoms. What people don’t understand is that the control, usually just postpones a more severe outburst of symptoms. It is very much like have the urge to cough or sneeze, eventually you just have to.
I don’t talk about it much, I never have. There’s a stigma attached, an untrue one; but when has that ever stopped people from making assumptions? Most people don’t even know I have it. Some people ask questions though, they always have, “is something wrong with your neck?” or “did you sleep a little funny last night?” or “are your allergies bothering your eyes?” I’ve actually had people give me the business cards of chiropractors. I always get a little mad at these questions especially when they come from strangers. I find them tactless. How would they like it if I walked up to them and asked “why are you so fat?” or “I see that you have a giant hairy mole on your face that’s making everyone sick, allow me to give you the business card of my dermatologist!” There is a great deal of misinformation about Tourette’e and I have enough stereotypes to contend with thank you very much. Very rarely can a person identify it, usually because they know someone who has it. I always feel very put on the spot when they flat out ask, “do you have Tourette’s?” I feel that it is my business and my prerogative who I tell. I felt strongly abou that as a teenager so I lied about it. I said “yes my neck is bothering me, yes I must have slept on it funny” or “yes my eyes do itch, got any Visine?” I treated it like it another secret. I was already fighting against people’s pre-conceived notions of me; I did not want to take on a new cause. People make gay jokes, and people make Tourette’s jokes I could only deal with so much. So although I never felt any personal shame about having it, I was very selective about whom I told!